Grave's relapse?

[Tenko]

I was diagnosed with Grave's disease 2 years ago. I had 20 months on Carbimazole which I tolerated well. For the last 6 months I was on a maintenance dose of 5mg with a TSH of around 2 and T4 between 14 and 15 and felt fine. I was taken off the drug 2 months ago and my TSH has decreased with each blood test but my T4 has remained stable. Recent results are TSH 0.28 (0.35-5.5), T4 14.6 (10-19.8) and T3 5 (3.5-6.5). I feel hyper - palpitations, anxiety and fibromyalgia flare up. In fact, I feel awful. My NHS consultant says that my thyroid levels are normal and she doesn't need to see me for 2 months. I commented on my decreasing TSH and she said that they only look at the T4 and T3 and they are normal. Surely my TSH levels show that I am heading for a relapse? If this is the case I would like to go back on the carbimazole but the consultant said that this is not an option as it destroys the bone marrow.

[Clutter]

Tenko,

Your FT4 and FT3 are currently euthyroid and nowhere near the tops of their respective ranges. TSH is mildly below range but is not nearly suppressed. Symptoms can precede abnormal bloods but you don't appear to be relapsing yet.

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I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Tenko in reply to Clutter]

Thanks Clutter, I was hoping you would respond!

So, do you think that the decrease in TSH is just because I have come off the carbimazole and that it might yet recover? I am feeling so ill but I can't be sure if that is due to the fibro flare up. Why isn't decreasing TSH affecting the T4 levels? Does TSH only affect the way you feel if the T4 levels change?

It's all so confusing.

[Clutter in reply to Tenko]

Tenko,

TSH doesn't have any effect on how you feel. It's mainly FT3 levels which make you feel hyper or hypo. When TSH drops FT4 and FT3 usually rise. My TSH has been <0.01 for 5 years but I'm not hyper because my FT4 and FT3 are within range.

I don't think it's just about FT4 and FT3 levels either. I know Hashimoto's made me feel desperately ill when I had euthyroid TSH, FT4 and FT3 so I imagine Graves antibodies can kick off and make a person feel unwell when their bloods look good.

[Tenko]

Thank you for explaining that Clutter. It's good news, just doesn't physically feel like it!

[wendypartridge]

I am like you , same time line and same reactions , I got so fed up of the way I felt I started on 2,5 of carb aday , No one will take any notice of you till your T4 and T3 raise , they will raise but it will take time . Also a low tsh can make you feel ill , I know it did with me . good luck fight your corner . I do not understand why people think a low tsh has no effect on people , it does it can make you feel dreadful , also you have the graves antibodies to contend with , I was told 'oh your tests are normal blah blah 'yet like you i felt terrible .

[Tenko]

Update - I saw my lovely private endo today. She has treated me since diagnosis but my health insurance stopped paying which is why I reverted to the NHS. It was well worth the cost. She said that I have definitely relapsed and she is furious that the NHS doctor insisted my bloods were normal. Even if I didn't have Graves, my plummeting TSH should have been treated as sub-clinical hyperthyroidism. Plus the tremors, hot flushes and palpitations are all signs of going hyper again.

I am back on the carbimazole and will have to make the tough decision of which route to follow. I don't consider RAI an option as I am too scared of the link with TED. So it's either surgery or long-term Carbimazole.

.